If you've ever visited us in the hospital, or anyone in the NICU, you know what Steri-soap is... its that sterile smelling hand wash that they make you use at every sink at the hospital. You know... the one that kills every bacteria known to man and makes your hands feel like you've spent all day crawling across the Sahara in August.
Anyway, tonight in our pre-op preparations for Will, we had to bathe him in it. And then again tomorrow, before we leave for the hospital at 5:45a, he's got to have another super refreshing, super drying, super sterile smelling bath. Ouch! The poor kid's got sensitive skin... this isn't helping!
We got the call late this afternoon that we're scheduled for the OR first thing in the morning for Will's g-tube surgery. Hopefully the whole thing happens roughly on time, because we aren't allowed to feed him anything by mouth after midnight tonight.
This whole "planning for surgery" thing is really new for Nate and me. Aside from one time in the NICU, every surgery the boys have had has been in an emergency situation... shunts malfunctioning... neurosurgeons on call in the middle of the night. We've known for weeks that June 9 is the day. Its weird. I have actually had time this evening to walk around the house and calmly pack an overnight bag, rather than rushing around the house in a sleepy, scared, middle of the night, awake with a vomiting child stupor, actually able to think about what I'd like to have over the next three days, rather than what we can't live without for the next 24 hours! We even had the time and forethought to move Luke's car seat and stroller to Oma's car, to allow her some mobility over the next couple of days while we're tied up at UNC with Will.
Its all amazingly different, though not without anxiety, of course. We aren't looking forward to the surgery tomorrow, though we are looking forward to the end result of fat Will :)
If you'd like a better understanding of g-tubes and what our experience is going to be like, check out this super-cute, yet informative children's story that Nate found online today (its a .pdf file, so only open it if you've got Adobe Acrobat Reader).
So keep us in your thoughts... hopefully by noon tomorrow, Will will be on the road to chubby cheeks and a belly to match his brother's!
Monday, June 8, 2009
Monday, June 1, 2009
Pick up the phone, North Carolina residents!
We need your help! With the budget crisis in the state looming darkly over our heads, the state legislature is about to vote THIS WEEK on a new budget which would severely cut funding for such essential programs as Early Intervention and Medicaid. Both of these programs have helped Luke and Will tremendously and by cutting funding to these programs and education, the amount of assistance and therapy that Will (and our family!) could get into the future would be severely limited.
HB 672/673
This week the House of Representatives has come to grips with what a $4.5 billion dollar deficit will look like and has begun an attempt at a spending plan without increased revenues. The results will be disastrous for all North Carolinians and even worse for NC citizens with disabilities and their families.
In the Department of Health and Human Services the Committee is expected to reduce spending by $1.35 billion. This cut must come from the $4.9 billion state funds in the DHHS budget. A 20% cut is terrible in its own right, but the DHHS only has $1.713 billion that is not in the Medicaid program matching federal funds. Of the remaining $1.713 billion, over $700 million is in the Division of MHDDSAS. Any dollar cut in Medicaid adds an additional $2 to the impact of the cut.
If the legislature doesn't take action, we can expect significant reductions in CAP/DD/personal care services/state funded developmental disabilities services/vocational rehabilitation services and much more.
In education, class sizes will increase dramatically, teacher assistant's positions and other support services will be eliminated, and the school year will be shortened by 5-10 days. Community colleges who train workers for our field will be slashed as well as University programs that produce teachers and professionals who support people with disabilities will be severely cut.
The week of June 1st is Critical to Stop Massive Budget Cuts. The House Health and Human Resources Committee have proposed cuts that will completely destroy North Carolina's system for supporting people with Developmental Disabilities. These cuts will set NC back decades in our support of people, will eliminate services to thousands, cause massive cuts to thousands more and eliminate tens of thousands of jobs. It is not an overstatement to say that people with developmental disabilities will lose their lives.
We must act now or these cuts will happen.
A few of the worst are
- Reducing the budget for MHDDSA state service dollars by over 150 million dollars
- Eliminating continuation increases in Medicaid of over 500,000 million dollars. This cut means serious reductions in CAP because any plan increases for individuals implemented during the last fiscal year will be eliminated!
- Freezes CAP Slots for a 15 million dollar savings-this means if someone moves, dies the slot is not available for anyone new
- Cuts all Medicaid service provider rates by 4% causing salary reductions and layoffs
- Cuts Medicaid personal care services by over 50 million dollars reducing this service by over half-this is the only direct service other than case management that is a Medicaid entitlement for people with developmental disabilities.
- Cuts Case Management services by over 50 million dollars by "consolidation"
The budget proposal also eliminates the Medicaid program Community Support which is the one Medicaid community program designed to support people with Mental Illness in community settings. The proposal cuts over 1.5 billion in state funds from DHHS by the end of the 2011 fiscal year. Because so much of the cut is in Medicaid the cut to NC's economy is over 4 billion dollars! We estimate that the cuts will reduce spending on the MHDDSA system at least one third and could reach more.
Here's what we must do!
Of course these cuts along with cuts in education, justice and other state service areas will cause outrage amongst organizations but we can not rely upon others to voice concern. Our action this week and through the summer is the difference in the future of our state!
In Wake County, contact your Wake County representative. Make a special call to Wake County representative and Minority Leader Skip Stam at 919-733-2962. These legislators must receive thousands of calls telling them that this is unacceptable! Everyone should call these leaders. And encourage friends, church members, family members, self advocates to call. E-mails will not work this time. WE MUST CALL.
Members will be back in their offices Monday afternoon. Start calling Monday at noon! Leave a message if you can't speak to your representative and call back if the line is busy.
For your member, call the Legislative Switchboard 919-733-4111 or go to the Legislative web site http://www.ncga.state.nc.us/ and look under the House member list for the phone number.
Here's the simple message you can tell your House member:
The proposed cuts in HHS and education will destroy our state, risking the lives of people with disabilities, our children's future. Cost thousands of jobs and drive our state into a depression! Raise taxes in order to avoid this disaster! We hold the House accountable!
If we fail to respond, people with disabilities and their families will see significant and life changing reductions in the supports and services offered by North Carolina.
Even if you've never been the calling or advocate type, please consider calling on behalf of all children in the state for whom these services are essential. If you need a face to inspire your call, please see the photo below of Will enjoying his dip in our kiddie pool this past weekend. Will is seen weekly by no fewer than three therapists who are in part funded by Early Intervention money from the State of North Carolina. These funding cuts could limit or completely eliminate the funding for the services that he currently receives.
Please see the note I have included below from our local ARC chapter. There is information listed about legislative contacts in Wake County and a couple of topics to bring up when you talk with someone at the Capitol. If you live in NC but in another county, there is website that you can access the name and contact information for your local legislator.
** From the desk of Steve Strom, Director of the ARC of Wake County **
HB 672/673
This week the House of Representatives has come to grips with what a $4.5 billion dollar deficit will look like and has begun an attempt at a spending plan without increased revenues. The results will be disastrous for all North Carolinians and even worse for NC citizens with disabilities and their families.
In the Department of Health and Human Services the Committee is expected to reduce spending by $1.35 billion. This cut must come from the $4.9 billion state funds in the DHHS budget. A 20% cut is terrible in its own right, but the DHHS only has $1.713 billion that is not in the Medicaid program matching federal funds. Of the remaining $1.713 billion, over $700 million is in the Division of MHDDSAS. Any dollar cut in Medicaid adds an additional $2 to the impact of the cut.
If the legislature doesn't take action, we can expect significant reductions in CAP/DD/personal care services/state funded developmental disabilities services/vocational rehabilitation services and much more.
In education, class sizes will increase dramatically, teacher assistant's positions and other support services will be eliminated, and the school year will be shortened by 5-10 days. Community colleges who train workers for our field will be slashed as well as University programs that produce teachers and professionals who support people with disabilities will be severely cut.
The week of June 1st is Critical to Stop Massive Budget Cuts. The House Health and Human Resources Committee have proposed cuts that will completely destroy North Carolina's system for supporting people with Developmental Disabilities. These cuts will set NC back decades in our support of people, will eliminate services to thousands, cause massive cuts to thousands more and eliminate tens of thousands of jobs. It is not an overstatement to say that people with developmental disabilities will lose their lives.
We must act now or these cuts will happen.
A few of the worst are
- Reducing the budget for MHDDSA state service dollars by over 150 million dollars
- Eliminating continuation increases in Medicaid of over 500,000 million dollars. This cut means serious reductions in CAP because any plan increases for individuals implemented during the last fiscal year will be eliminated!
- Freezes CAP Slots for a 15 million dollar savings-this means if someone moves, dies the slot is not available for anyone new
- Cuts all Medicaid service provider rates by 4% causing salary reductions and layoffs
- Cuts Medicaid personal care services by over 50 million dollars reducing this service by over half-this is the only direct service other than case management that is a Medicaid entitlement for people with developmental disabilities.
- Cuts Case Management services by over 50 million dollars by "consolidation"
The budget proposal also eliminates the Medicaid program Community Support which is the one Medicaid community program designed to support people with Mental Illness in community settings. The proposal cuts over 1.5 billion in state funds from DHHS by the end of the 2011 fiscal year. Because so much of the cut is in Medicaid the cut to NC's economy is over 4 billion dollars! We estimate that the cuts will reduce spending on the MHDDSA system at least one third and could reach more.
Here's what we must do!
Of course these cuts along with cuts in education, justice and other state service areas will cause outrage amongst organizations but we can not rely upon others to voice concern. Our action this week and through the summer is the difference in the future of our state!
In Wake County, contact your Wake County representative. Make a special call to Wake County representative and Minority Leader Skip Stam at 919-733-2962. These legislators must receive thousands of calls telling them that this is unacceptable! Everyone should call these leaders. And encourage friends, church members, family members, self advocates to call. E-mails will not work this time. WE MUST CALL.
Members will be back in their offices Monday afternoon. Start calling Monday at noon! Leave a message if you can't speak to your representative and call back if the line is busy.
For your member, call the Legislative Switchboard 919-733-4111 or go to the Legislative web site http://www.ncga.state.nc.us/ and look under the House member list for the phone number.
Here's the simple message you can tell your House member:
The proposed cuts in HHS and education will destroy our state, risking the lives of people with disabilities, our children's future. Cost thousands of jobs and drive our state into a depression! Raise taxes in order to avoid this disaster! We hold the House accountable!
If we fail to respond, people with disabilities and their families will see significant and life changing reductions in the supports and services offered by North Carolina.
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